Patients who are on or have tried lefloumide???

[Prairie]

I have one more dmard to try which is lefloumide....I'm having a chat with my consultant next week before I start it....any advice would be helpful thanks Nicola x

[Hidden]

Hi Nicola, I'm using Leflunomide. I started using it about 5 years ago as a top up for Methotrexate so I only have a 10mg tablet. I'm no longer using Methotrexate (long story) so currently just on 10mg Leflunomide. I saw my rheumy last August and she said she would leave things as they are, but if I need to see her about my meds I can ring her. I've had no problems with the drug whether alongside metho or alone. Hope it goes well for you.

Kath xx

[Prairie in reply to Hidden]

Thanks kath they are going to start me on low dose...do you take it every day...Ive tried other dmards and they make me feel worse than the actual disease but I've got to be on something that is going to help me:-)so this is the next to try....thanks again xxxx

[Hidden in reply to Prairie]

Yes, I take it every day unlike the metho, which was once a week. I am on 10 mg only

[lab-lover]

I was on it last year, for a time, along with mxt, I had no bad effects at all. I was taken off it when they decided to give me biologic s. Hope it helps you.

[Prairie in reply to lab-lover]

Thanks for reply I hope it helps and suits me...xxx

[Hidden]

Hello

I took this one last year, I had contraindications and it was withdrawn as did not suit

Good Luck

BOB

[Prairie in reply to Hidden]

Thanks bob hope this one suits me....

[aligator]

Hi, Prairie, I've been on leflunomide for 2 years after mtx damaged my lung. I have had no bad reaction & felt it helped but now i have had biologics added to improve condition. I hope you get on well with it & feel some benefit soon. Good luck. Love Alison xx

[Prairie in reply to aligator]

Thank you Alison I suppose we have no choice as to try these drugs to see which one we tolerate. Hope I can tolerate this one...big hugs take care Nicola xxx

[Hidden]

I've been on 20mg daily for 2 weeks now. I'd heard a fair few horror stories about leflunomide but so far I've had no problems whatsoever. This will be my last shot at a DMARD so I'm hoping it'll work. Other DMARDs haven't been effective enough for long but I've never had any bad side effects. I think the best thing is to think positive.

[Prairie in reply to Hidden]

Hi thanks for reply....this is my last dmard...hope I tolerate it...everyone's different and we have to try....I hope the horror stories miss me out...

[Hidden in reply to Prairie]

Oh sorry - that came out wrong, not exactly horror stories ..... just had the impression I'd heard more bad than good reports until I looked more carefully - direct questions like the one you've asked seem to root out the good experiences which I'm sure are the majority.

[Prairie in reply to Hidden]

I know what you mean...I read up on lots of people experiences and nasty side effects but I guess we have no choice as to give these meds ago...we all tolerate meds differently thanks again Nicola xxx

[Hidden]

HI...

With all medications there is a chance of side effects... I was one of the unlucky ones with constant nausea and diarrhea a dozen times a day soon after I started taking it but there are lots who it has worked for.

Think positive and we will cross fingers you are one of the lucky ones as I do believe it can be a terrific med in those who tolerate it. If not, there are loads of others you can change to...

-gail

[Prairie in reply to Hidden]

Hi thank you Gail for reply...I'm got an appointment with rheumy nurse to have a chat about it...I know this is my last dmard to try as other dmards I can't tolerate they make me more poorly than the actual disease this one I also have my doubts before I even try it as I struggle to keep my weight at 7 st 12 I have stomach and swallowing health issues. My consultant didn't want to put me on this one because of this. So I don't understand why now he wants me to try it...confusing.....thanks again Nicola xxx

[Hidden in reply to Prairie]

Have they tried you on any biologic dmards yet?

[Prairie in reply to Hidden]

No only dmards xxxx

[Someonesmother]

Hi Nicola I tried it late last year and although I didn't think I had any reaction I started to get pins and needles and ended up being taken off it as I had a rare reaction. BUT that is me I have the weirdest reaction where most people don't. I didn't get any of the other side effects others write about and the Rheumy thought it would be the one that I had least reaction to. Oh well. Good luck I am sure it will be fine for you

[cathie]

Has anyone had bad liver readings for this? I've suffered through the more common mtx effects, but it does seem to have affected my liver, so may have to think about leflunomide.

On side effects, I have found that after a while, sometimes quite a long while, they do settle down a bit.

[Prairie in reply to cathie]

Thanks cathie for your reply I will have a chat before I start it if I do ?...

[pineapple_head in reply to cathie]

No I haven so far!

[pineapple_head]

I'm on 20mg and it's the best DMARD that I ever had. Except that at the beginning I developed a rash but it was found that I was allergic to the colour of the 20mg tablets. It was easy to resolved because I now take 2 times 10mg tablets!!

Good luck, I hope it works out for you and I hope that you get the same benefit that I have!

[Prairie in reply to pineapple_head]

Thanks for your reply its good when something works...not much for us to ask for....Nicola xxxx

[pineapple_head in reply to Prairie]

I forgot to say that you may have funny tummy and diarrhea but you can take one cocodamol and it should settl this. This still happens to me sometime and the cocodamol always sorts it out. I also take each 10mg separately. One in the morning and one with my evening meal. Take care

[Hidden]

I was started on lefloumide last week after mtx wasn't working I'm also taking hydrox and sulfalazine , this week I've found I'm really struggling been so tired more than usual and feeling bit light headed and pain is no different I'm going to carry on and see if things improve . early days

I guess It seems everyone is different what works for some don't work for others . Hope this works for you , and you feel better on ASAP it's all about finding the right treatment for you , keep us informed on how it's going . Hugs to you x

[Prairie in reply to Hidden]

Hi thanks for your reply. Your right we all suffer differently what works for some people don't always work for others...we have to try...hopefully I will find the right treatment...will let you know thanks again big hugs xxx

[Susiej38]

I can only speak from my own experience. This medication did not work for me due to side effects ( nausea, vomiting, diarrhea, dizziness). And I only took it for 2 weeks. But I also have a history of digestive problems. A web site that might help you is askapatient.com. You can go there and put in Leflunomide and it will pull up 152 reviews of people who have used this medication. Hope this helps you and good luck!

[Prairie in reply to Susiej38]

Hi thank you for your help. I will have a look...I have digestive problems too and the doctor didn't want to put me on this because of this and also I find it hard to keep weight on....he has only changed his mind because gold and other dmards don't work for me...I won't be rushing into taking this until I speak to him.... Thanks again xxx

[Susiej38 in reply to Prairie]

Before Leflunomide I was doing Methatrexate injections, but only for 5 wks, so I don't know if I didn't give the Methatrexate enough time, but I am now back on the injections. I don't see improvement, but I am trying to stay with it and am going to also have to add biologics. It is very frustrating. I hope you find a med that will work for you. Don't know if you have tried Methatrexate by injection, but that is why dr put me on that due to my digestive issues. I don't have stomach or digestive problems with the shots.

[sagil]

I was on leflunomide for 6 weeks and lost too much weight. I lost over 15 lbs and I only way 115 lbs. So it didn't work for me.

[Prairie in reply to sagil]

Thank you for your experience.....I really couldn't do with losing weight as I'm skin and bone to start with....we have a lot to put with....xxx

[lilianisaac]

I was one of the first patients to go on this drug back in 2000 when it was first used. I tolerated it well, had no side effects and it worked wonders for me. I had a fantastic 8 years on it with no problems at all. After this time it started to lose its efficacy and I'm now on TNF's as well. Just go for it and if it works as well for you as it did for me you'll feel great after about 2 months. I was on 20mg daily. Good luck Pat x

[Prairie in reply to lilianisaac]

Thank you pat...that's great when a drug suits you...and 8 years with no problems...I hope I find something that I can tolerate...we don't know until we try...thanks again xxxxx

[Hidden]

I haven't tried Leflunomide yet but I have tried Sulfa and MTX (both oral and injectable) and like you I do tend to suffer side effects from drugs - usually the rare ones! I'm currently only taking Hydroxichloraquine which I'm okay with and seems to working well. Tilda x

[Prairie in reply to Hidden]

That's good news tilda....something we tolerate and works for us...not a lot to ask for...thanks again Nicola xxxx

[whirlygirl]

Hi Prairie, I tried lefloumide for 2 months. It sure helped, but caused me extreme nausea and weight loss. I hope this drug works for you.

[Prairie in reply to whirlygirl]

Hi thanks for reply...I really can't afford to lose any weight...I'm going have a chat with my rheumy before I start it...we have to try and hopefully not suffer the side effects.....thanks Nicola xxx

[wvcry]

Hello. I took this med for 7 days and stopped taking it on the 8th. Its now 12 days 4 days without and I have been so sick since i began. Even wound up in the hospital. The days i took it i was useless couldn't get off the couch. Just walking to the bathroom i brake out in a terrible sweat and still do. I still feel terrible and the hospital told me that it could be 2 weeks if not longer to get it out of my system. Just be careful. I have been though alot of diff meds and none help for the long run. Prednizone is the only thing that does the job.

[Prairie in reply to wvcry]

Hi thank you for reply...what strength were you on.? I had an appointment with my rheumy nurse few weeks ago and we had a talk about this drug and my consultant wasn't sure I would tolerate it as i weigh 7st 13 I have stomach issues...so they were having a meeting with other consultants as to what my next drug will be?? I've tried most dmards and was very poorly on each one...I'm not on any meds as yet waiting for my next appointment...thanks again Nicola xxx

[GSDLover]

Hi Prairie, I have be on Leflunemide for several years and I now take it with Humira. I did have some side effects initially, mostly hair loss and intestinal. My Rheumy told me that it causes you to slough your intestinal tract daily and this is common. I did not find it to be that troublesome and it got better with time. I take mine at night so I don't know about any fatigue and with RA who can argue about being sleepy at night :). I was very concerned to start it because of all the feedback given but I am now a chapion for telling people with RA to try the meds. If you don't like it or have side effects let your doctor know. Often they can counter them. I have been on almost every RA med they make (trust me) and this combo seems to work the best for me

For those of you with RA and fatigue I highly recommend CoQ10. I started it on my doctors advice and it has turned me around. I can now make it through a full day without having to take a nap. Start with as low a dose as you can find and build over months to 100mg. If you start with 100 right away it can make your heart race and that is not fun. I like the gummy kind personally but the soft gels work too.

Good luck to you and I hope they find something that helps you. Don't be afraid to try the meds. I have had an alertic reaction to 3 of them but that has not stopped me from trying them. Personally I like to be able to walk and use my hands. One more thing, always start a new med at the beginning of the week so you can reach your doctor if needed, don't wait until the weekend.